We spoke with Shirley Sillman, wife and caregiver of Bob Sillman, who was diagnosed with younger-onset Alzheimer’s in 2007.

Have you noticed stigma or jokes about Alzheimer’s in pop culture?

Of course. But we (society) tend to mask our fears and misunderstanding though humor. I do it every day. If I didn’t joke or laugh about it — especially with Bob — I would probably be a wreck. Do jokes marginalize and ultimately stigmatize the disease? My view of the world these days is pretty selective, considering caregiving is a full-time job. I haven’t noticed that pop culture has had the chance to really address this disease, I think because of how misunderstood it is.

Were you surprised by the stigma associated with Alzheimer’s?

With all of the information at our finger tips these days, it surprises me more when I see the blank look of people who don’t know what to say or do when they learn Bob’s has Alzheimer’s. I often wonder if people are more uncomfortable with themselves than with the disease. On one hand, leprosy can be held up as an example of a disease which holds the ultimate social stigma society can offer. The condition is terrible, and even in the absence of actually encountering someone with leprosy, we’re all conditioned that those afflicted are outcasts and should be avoided at all cost. Alzheimer’s, on the other hand, invokes a very honest insight into what people know about the disease (and importantly, how to react to someone with this disease). Where is the collective conditioning that you find with leprosy (or any other disfiguring, immediately degenerative disease)? It’s not there. Nobody has really explained to us how to act and cope with this one.

How did you deal with the stigma?

I can only answer this as it relates to my own circle of friends and family. I deal with it as directly as possible. In the case of family, friends and neighbors, the best approach has been to educate them early on and as much as possible. Not unlike the shock you see after an accident or catastrophic event, people need (in some cases want) to be instructed what to do. I believe laying down all of the facts and telling friends, family and strangers how they can help Bob is crucial. In the absence of understanding is fear and uncertainty. It’s really easy to look away when you can’t identify with and understand what you don’t know.

What advice would you give other families dealing with stigma associated with Alzheimer’s?

Don’t let it spread in your social circle — your family, friends and neighbors. You cannot (and should never) force anyone to cope with what they are unwilling to handle, but certainly know your facts about the disease and educate those closest to you. You can hope that some of what you impart and share with them will make it to another set of ears that may have a desire to learn more. That’s how ignorance is overcome: one person at a time. Ask people 30 years ago about the symptoms of heart disease and compare those answers to what people know now, and I’ll bet you’ll find that all of that public education about heart disease has paid off.

What would you say to the people who believe the stigma surrounding Alzheimer’s?

This is a tough one. Because until people are directly impacted and affected by what they fear (or do not understand), it is unlikely that they will change their mind or perception about the disease.

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Shirley and Bob Sillman Sillman live in Oklahoma where they are very active with their local Alzheimer’s Association chapter. Bob was recently featured in a Walk to End Alzheimer’s television ad. Their team, Forget Us Not, has raised nearly $5,000 to support Alzheimer’s research, programs and care. To find a Walk to End Alzheimer’s in your area, click here.

23653 Responseshttp%3A%2F%2Fblog.alz.org%2Fa-caregivers-perspective-on-stigma-and-alzheimers%2FA+Caregiver%27s+Perspective+on+Stigma+and+Alzheimer%E2%80%99s2012-08-30+15%3A03%3A10Alzheimers+Associationhttp%3A%2F%2Fblog.alz.org%2F%3Fp%3D2365 to “A Caregiver’s Perspective on Stigma and Alzheimer’s”

This is a great post.
It is so true that people don’t really get it until they are directly impacted by this disease. It is something you don’t even think about, like cancer, but this disease is so tormenting. My siblings and I are always chuckling at little funny moments with my dad, it helps to keep things lite, otherwise, it would be an endless stream of tears.

Your post hit home with me and I thank you. With two family members afflicted with this insidious disease ( one late 60's, the other late 80's) I fully understand your comment, "In the absence of understanding is fear & uncertainty." Knowledge is powerful in dealing with this disease (or any disease) but I have learned that not all feel this way. Turning their backs and not showing up is a result of lack of knowledge as well as fear. Your analogy to the symptoms of heart disease paying off is right on. I thought if I had a child with a disease, wouldn't I want to learn as much as possible about that disease? Not forcing someone in a social circle unwilling to handle the situation is so true and vice versa. The with person with Alzheimer's or any form of dementia should not be forced in a social situation. I appreciate your article so much and I pray for a cure, peace, understanding and abundant love to surround all those in our circle.